Having the (Im)Perfect Baby   2 comments

My baby boy was born without a thyroid.

In Kansas (and, I assume, other states, too), they perform a newborn screening. They take blood and test for certain conditions. One of those conditions is hypothyroidism, which affects about 1 in 4000 babies. Which seems like a lot of babies, but that’s the statistic, and I’m sure there are varying degrees of hypothyroidism, so I can’t really argue with their numbers. There are several ways that a baby ends up with congenital hypothyroidism. 1) They have no thyroid at all, like my baby. 2) They have a gland but it’s too small or in the wrong place or otherwise malfunctioning.

When left undiagnosed and untreated, hypothyroidism leads to lethargy, constipation, stunted growth, and severe mental retardation. When hormone levels are fixed early though (as in, the first six weeks of life), a baby with hypothyroidism can grow up completely normal (other than the fact that they have to take a pill every day). Needless to say, I’m perfectly happy giving my newborn his medication.

Nathan also happened to fail his hearing screening. So, a week after he was born, we had an appointment with an endocrinologist. She sent us from there to get an ultrasound so they could look for any sign of a thyroid. Then he had his repeat hearing screening. The next day, they did a thyroid scan to confirm the absence of a thyroid.

It was a rough couple days.

My baby boy with his IV. He slept through the whole thing.

As a mother (or a father, probably), it’s always painful to watch your child get poked or prodded. I remember tearing up when my daughter got her first shots. It was even worse to watch my 9 day old son get an IV in the top of his head. And he still didn’t pass the hearing test with his left ear. So next week, we get to do it all again (minus the ultrasound and thyroid scan). And then, we ended up with thrush, so he was on even more medication. It all gets a little exhausting.

So far, I’ve done a good job of not allowing myself to take the blame. The hypothyroidism is genetic, so we may just be a faulty cocktail. It’s not something we could have foreseen or prevented. And his hearing could just be fluid in his ear and could be nothing. So while I’ve had those thoughts (What if I hadn’t induced? What if I’d been better about taking my prenatal vitamins? What if I’d taken it easier at work? What if we hadn’t moved? What if we’d moved sooner?), I’ve been doing a decent job of telling those thoughts to take a hike. And while no parent wants their kid to be on medication for their entire life, there are much worse things that could have popped up on the newborn screening. And because they test for it at birth, we’re able to prevent a lot of terrible outcomes. In one week, the medication brought his TSH levels from over 500 down to 14 (normal is .4 to 4).

And no matter what, Nathan is still my perfect baby boy.


2 responses to “Having the (Im)Perfect Baby

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  1. Oh, hon. I had no idea. I’m so sorry for this struggle you and your sweet boy are facing.

    We have a child (our only son out of four children) who had horrifying reflux, eczema, still has moderately severe asthma, and now he’s getting diagnosed with ADHD. He also has amblyopia, resulting in the need for my 7 year old hyperactive son to wear bifocals. When he was 8 weeks old, he had to get get his frenulum snipped (bit under the tongue since he was also tongue tied).

    Let me just say that I feel for you, and for the pain of watching your beautiful child suffer through things he can’t possibly understand. I’m so grateful for modern medicine, without which he would have died long ago. He’s also an incredibly dynamic person, with compassion and a strong sense of self. He’s still a goofy kid but I think everything he’s experienced has made him strong.

  2. My thoughts and prayers are with you! Thank goodness there is a treatment and I hope he continues to receive such good medical care. Just as important is the love you all are surrounding him with. Call if you need anything!

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